Ray's puffy lip

[Guest guest]

My husband Ray woke up this morning with a fat lip. As far as I know he has

had no bump or fall that would cause this. He was fine getting bathed,

shaved and dressed but when we got to the kitchen, he refused to drink his

juice and take his pills and he refused to eat (which is very unusual for

him). Now that I think of it, perhaps he couldn't swallow correctly--hmmm?

He got in the car and went to day care without any problems and things went

well there today they reported. My daughter picked him up and said his lip

was puffy and by the time I saw him tonight, it was worse than this morning

and he says the left side of his tongue is numb. (left side of his mouth is

puffy and he is drooling worse than normal). I think I will call for the

Public Health nurse tomorrow or take him to the doctor if it is still a

problem. As far as I know he has no allergies, he has been on a higher dose

of seroquel for a week now and nothing else has changed. He had tuna fish

for lunch yesterday but that has never been a problem so I am not suspicious

of that.

Anyone have an idea or experience with anything like this? Thanks, Leona

Leona: Caregiver for husband Ray, age 67, diagnosed 2/04 with Parkinson's

Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill

slide no matter what drugs we try.

There's a magical tie to the land of our home, which the heart cannot

break, though the footsteps may roam. Eliza Cook

[Guest guest]

Leona,

Could there be a possible stroke? Or a reaction to the fish. I might go have

an MD check him sooner rather than later.

Just thoughts off the top of my head. Sure don't want to scare you, but I might

be prompted to call his MD if I didn't take him in to the ER.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Ray's puffy lip

My husband Ray woke up this morning with a fat lip. As far as I know he has

had no bump or fall that would cause this. He was fine getting bathed,

shaved and dressed but when we got to the kitchen, he refused to drink his

juice and take his pills and he refused to eat (which is very unusual for

him). Now that I think of it, perhaps he couldn't swallow correctly--hmmm?

He got in the car and went to day care without any problems and things went

well there today they reported. My daughter picked him up and said his lip

was puffy and by the time I saw him tonight, it was worse than this morning

and he says the left side of his tongue is numb. (left side of his mouth is

puffy and he is drooling worse than normal). I think I will call for the

Public Health nurse tomorrow or take him to the doctor if it is still a

problem. As far as I know he has no allergies, he has been on a higher dose

of seroquel for a week now and nothing else has changed. He had tuna fish

for lunch yesterday but that has never been a problem so I am not suspicious

of that.

Anyone have an idea or experience with anything like this? Thanks, Leona

Leona: Caregiver for husband Ray, age 67, diagnosed 2/04 with Parkinson's

Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill

slide no matter what drugs we try.

There's a magical tie to the land of our home, which the heart cannot

break, though the footsteps may roam. Eliza Cook

[Guest guest]

Dear Leona, how exhausted you must be. I am so sorry. It is all very hard I

understand, but I haven't had to place Don yet. But, I have spent untold days

and months with him in the hospital. So I know the exhaustion. I really am

sorry.

I didn't respond to your first letter, because I didn't know what caused

your husbands' swollen lip. Now, with seeing how low his BP was then I strongly

suspect that he had gotten up at some time, and fell, but didn't wake you. He

may not thought to wake you. Don doesn't many times.

I'm so sorry Leona, I hope the NH placement goes well. Don just work up to

go potty, and he asked me how many eggs were on the floor. I told him he could

walk on them, it wouldn't hurt anything.

And so it goes---with all the pain of watching it happen to someone we love

so much.

Take care of yourself Leona, and again I am sorry,

Love a lot,

Imogene

In a message dated 4/24/2008 10:36:18 PM Central Daylight Time,

lchereshnoski@... writes:

I sent this to the group (I thought) on Tue 4/22/2008 11:26 PM. I got one

response from Donna Mido on Wednesday but it never got to my mailbox until

?? and due to Ray's hospitilzation, I finally got to read it tonight (Thurs.

11 PM). Below the original is what has happened in the meantime.

My husband Ray woke up this morning with a fat lip. As far as I know he has

had no bump or fall that would cause this. He was fine getting bathed,

shaved and dressed but when we got to the kitchen, he refused to drink his

juice and take his pills and he refused to eat (which is very unusual for

him). Now that I think of it, perhaps he couldn't swallow correctly--hmmm?

He got in the car and went to day care without any problems and things went

well there today they reported. My daughter picked him up and said his lip

was puffy and by the time I saw him tonight, it was worse than this morning

and he says the left side of his tongue is numb. (left side of his mouth is

puffy and he is drooling worse than normal). I think I will call for the

Public Health nurse tomorrow or take him to the doctor if it is still a

problem. As far as I know he has no allergies, he has been on a higher dose

of seroquel for a week now and nothing else has changed. He had tuna fish

for lunch yesterday but that has never been a problem so I am not suspicious

of that.

Anyone have an idea or experience with anything like this? Thanks, Leona

Thurs. April 24th

It is a very difficult message to send:

Wed. I took Ray to the GP after an evaluation from Public Health. The GP

really did not think he had a stroke and had no real answers for me. His

biggest concern was that Ray's blood pressure was only 88/55. His BP is

usually normal. He suggested that perhaps the sinemet could be causing it

to drop. He said as long as I never have thought it helped perhaps I should

discontinue the 3 doses a day (25/250mg. I wasn't comfortable doing that

without talking to Ray's neurologist so I called the office and talked to Dr

Mihaila's nurse. She spoke to the doctor and called me back saying that Dr.

would hate to deal with a situation like this over the phone and I should

take him to a hospital and get another brain scan. We went to Syracuse to

Upstate University Hosp. emergency room and spent the evening there. The

brain scan showed no changes, however the attending doctor wanted to keep

Ray for observation and a MRI in the morning. I stayed right in the room

with Ray and it was a difficult night but we made it. He woke up at 7 am

and had to urinate and went right back to sleep. None of us could get him

awake all morning. The doctor came in with a group of students observing

and taught (refreshed) them on the Parkinson's symptoms and then the

Diffuse Lewy Body differences. It was very interesting and heartwarming to

hear these young doctor's being taught about this terrible disease. One

thing he mentionned that I did not know and haven't noticed it on our list

of symptoms--a condition of dry scalp or seborrhea type scale on the front

hairline of the patient is almost always present with LBD. I was amazed.

Then he went on to point out what good care Ray has been getting because

that condition is well under control. (Thank the home health aide

probably!!)

Anyway, the nurses offered other services if we were interested and one was

the social worker. I discussed it with my kids and we agreed to talk to

them. They reviewed our situation and we have agreed that it is time for

nursing home placement. The last two months have been very difficult and it

is not getting better. So far here in our county and nearby nursing homes,

there is nothing available. However, this will put us higher on the lists.

He will stay in the hospital until he is placed somewhere, as far as I know

right now.

We have been married happily for 45 years and this is the hardest thing I

have ever faced in my life. Thank you all for understanding.

Leona: Caregiver for husband Ray, age 67, diagnosed 2/04 with Parkinson's

Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill

slide no matter what drugs we try.

There's a magical tie to the land of our home, which the heart cannot

break, though the footsteps may roam. Eliza Cook

**************Need a new ride? Check out the largest site for U.S. used car

listings at AOL Autos.

(http://autos.aol.com/used?NCID=aolcmp00300000002851)

[Guest guest]

I sent this to the group (I thought) on Tue 4/22/2008 11:26 PM. I got one

response from Donna Mido on Wednesday but it never got to my mailbox until

?? and due to Ray's hospitilzation, I finally got to read it tonight (Thurs.

11 PM). Below the original is what has happened in the meantime.

My husband Ray woke up this morning with a fat lip. As far as I know he has

had no bump or fall that would cause this. He was fine getting bathed,

shaved and dressed but when we got to the kitchen, he refused to drink his

juice and take his pills and he refused to eat (which is very unusual for

him). Now that I think of it, perhaps he couldn't swallow correctly--hmmm?

He got in the car and went to day care without any problems and things went

well there today they reported. My daughter picked him up and said his lip

was puffy and by the time I saw him tonight, it was worse than this morning

and he says the left side of his tongue is numb. (left side of his mouth is

puffy and he is drooling worse than normal). I think I will call for the

Public Health nurse tomorrow or take him to the doctor if it is still a

problem. As far as I know he has no allergies, he has been on a higher dose

of seroquel for a week now and nothing else has changed. He had tuna fish

for lunch yesterday but that has never been a problem so I am not suspicious

of that.

Anyone have an idea or experience with anything like this? Thanks, Leona

Thurs. April 24th

It is a very difficult message to send:

Wed. I took Ray to the GP after an evaluation from Public Health. The GP

really did not think he had a stroke and had no real answers for me. His

biggest concern was that Ray's blood pressure was only 88/55. His BP is

usually normal. He suggested that perhaps the sinemet could be causing it

to drop. He said as long as I never have thought it helped perhaps I should

discontinue the 3 doses a day (25/250mg. I wasn't comfortable doing that

without talking to Ray's neurologist so I called the office and talked to Dr

Mihaila's nurse. She spoke to the doctor and called me back saying that Dr.

would hate to deal with a situation like this over the phone and I should

take him to a hospital and get another brain scan. We went to Syracuse to

Upstate University Hosp. emergency room and spent the evening there. The

brain scan showed no changes, however the attending doctor wanted to keep

Ray for observation and a MRI in the morning. I stayed right in the room

with Ray and it was a difficult night but we made it. He woke up at 7 am

and had to urinate and went right back to sleep. None of us could get him

awake all morning. The doctor came in with a group of students observing

and taught (refreshed) them on the Parkinson's symptoms and then the

Diffuse Lewy Body differences. It was very interesting and heartwarming to

hear these young doctor's being taught about this terrible disease. One

thing he mentionned that I did not know and haven't noticed it on our list

of symptoms--a condition of dry scalp or seborrhea type scale on the front

hairline of the patient is almost always present with LBD. I was amazed.

Then he went on to point out what good care Ray has been getting because

that condition is well under control. (Thank the home health aide

probably!!)

Anyway, the nurses offered other services if we were interested and one was

the social worker. I discussed it with my kids and we agreed to talk to

them. They reviewed our situation and we have agreed that it is time for

nursing home placement. The last two months have been very difficult and it

is not getting better. So far here in our county and nearby nursing homes,

there is nothing available. However, this will put us higher on the lists.

He will stay in the hospital until he is placed somewhere, as far as I know

right now.

We have been married happily for 45 years and this is the hardest thing I

have ever faced in my life. Thank you all for understanding.

Leona: Caregiver for husband Ray, age 67, diagnosed 2/04 with Parkinson's

Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill

slide no matter what drugs we try.

There's a magical tie to the land of our home, which the heart cannot

break, though the footsteps may roam. Eliza Cook

[Guest guest]

I forgot to mention that Ray finally woke up at noon after returning from

his MRI. It was scarry but he seemed normal the rest of the afternoon. My

daughter Sherry is staying there with him tonight but I am going back out

tomorrow morning. Son is planning on staying with him Friday night.

Thank you for any comfort or advice you can give me. Leona

FW: Ray's puffy lip

I sent this to the group (I thought) on Tue 4/22/2008 11:26 PM. I got one

response from Donna Mido on Wednesday but it never got to my mailbox until

?? and due to Ray's hospitilzation, I finally got to read it tonight (Thurs.

11 PM). Below the original is what has happened in the meantime.

My husband Ray woke up this morning with a fat lip. As far as I know he has

had no bump or fall that would cause this. He was fine getting bathed,

shaved and dressed but when we got to the kitchen, he refused to drink his

juice and take his pills and he refused to eat (which is very unusual for

him). Now that I think of it, perhaps he couldn't swallow correctly--hmmm?

He got in the car and went to day care without any problems and things went

well there today they reported. My daughter picked him up and said his lip

was puffy and by the time I saw him tonight, it was worse than this morning

and he says the left side of his tongue is numb. (left side of his mouth is

puffy and he is drooling worse than normal). I think I will call for the

Public Health nurse tomorrow or take him to the doctor if it is still a

problem. As far as I know he has no allergies, he has been on a higher dose

of seroquel for a week now and nothing else has changed. He had tuna fish

for lunch yesterday but that has never been a problem so I am not suspicious

of that.

Anyone have an idea or experience with anything like this? Thanks, Leona

Thurs. April 24th

It is a very difficult message to send:

Wed. I took Ray to the GP after an evaluation from Public Health. The GP

really did not think he had a stroke and had no real answers for me. His

biggest concern was that Ray's blood pressure was only 88/55. His BP is

usually normal. He suggested that perhaps the sinemet could be causing it

to drop. He said as long as I never have thought it helped perhaps I should

discontinue the 3 doses a day (25/250mg. I wasn't comfortable doing that

without talking to Ray's neurologist so I called the office and talked to Dr

Mihaila's nurse. She spoke to the doctor and called me back saying that Dr.

would hate to deal with a situation like this over the phone and I should

take him to a hospital and get another brain scan. We went to Syracuse to

Upstate University Hosp. emergency room and spent the evening there. The

brain scan showed no changes, however the attending doctor wanted to keep

Ray for observation and a MRI in the morning. I stayed right in the room

with Ray and it was a difficult night but we made it. He woke up at 7 am

and had to urinate and went right back to sleep. None of us could get him

awake all morning. The doctor came in with a group of students observing

and taught (refreshed) them on the Parkinson's symptoms and then the

Diffuse Lewy Body differences. It was very interesting and heartwarming to

hear these young doctor's being taught about this terrible disease. One

thing he mentionned that I did not know and haven't noticed it on our list

of symptoms--a condition of dry scalp or seborrhea type scale on the front

hairline of the patient is almost always present with LBD. I was amazed.

Then he went on to point out what good care Ray has been getting because

that condition is well under control. (Thank the home health aide

probably!!)

Anyway, the nurses offered other services if we were interested and one was

the social worker. I discussed it with my kids and we agreed to talk to

them. They reviewed our situation and we have agreed that it is time for

nursing home placement. The last two months have been very difficult and it

is not getting better. So far here in our county and nearby nursing homes,

there is nothing available. However, this will put us higher on the lists.

He will stay in the hospital until he is placed somewhere, as far as I know

right now.

We have been married happily for 45 years and this is the hardest thing I

have ever faced in my life. Thank you all for understanding.

Leona: Caregiver for husband Ray, age 67, diagnosed 2/04 with Parkinson's

Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill

slide no matter what drugs we try.

There's a magical tie to the land of our home, which the heart cannot

break, though the footsteps may roam. Eliza Cook