reluctant intro

[Guest guest]

I've been lurking for a bit and reading posts. ly, I'm not thrilled to

have the qualifications to be on this list.

My father, Bill, who is 85 and previously a chemical engineer lives several

hundred miles from me with my stepmother, Pat. My dad has LBD. He has had

symptoms for several years....drooling, stiffness, worsening balance and

increasing falls, severe constipation and mildly slower thinking. He had a long

history of wild dreams...to the point that Dad and Pat had slept in separate

rooms due to his acting out his dreams. I am a family doctor but try not to

practice on any family members but on thinking about his symptoms, I contacted

his doc who is a friend of mine and told him what I thought was occurring (LBD).

I hoped that I was wrong although he agreed. In March of 2011 Dad called me to

tell me very matter of factly that he was having visual hallucinations. A

disturbing call to be sure.

I went with my dad to a neurologist visit this fall and told the doc what I

thought was going on. Unfortunately, that neurologist was not helpful. It was

interesting and disturbing to be on the other side of the unhelpful consult.

Anyway, he tried low dose sinemet with no discerable improvement but lots of

nausea.

Dad finally saw a different neurologist last month who correctly diagnosed him

with LBD and started him on higher dose sinemet and low dose seroquel. He is

VERY unsteady with very frequent falls. Dad was not able to sleep at this point

which was very disturbing. The higher dose of sinemet caused nausea and the

seroquel caused a bit too much sedation but at least he was sleeping but when I

would talk with him things sounded stable. He still has hallucinations but they

are not disturbing to him for the most part.

He went back to the neurologist this week and apparently complained of side

effects and she asked him if the meds were helping. He said no, so apparently

she stopped both meds on Thurday.

Friday am while at my office seeing patients I got a call from dad that his hand

was drawing and numb and that his leg felt numb also. I thought this could be a

stroke and told him to go immediately to the er. They dxed a muscle spasm and

sent him home after a ct scan was normal. (The thought passed thru my

mind...which is worse....LBD vs passing away from a stroke).

Yesterday (the next day) I got a very worried call from Pat. Abruptly that

morning, Dad had no idea what medications he was taking, could not read (he has

continued to read up until now as a major source of pleasure to him), could not

watch tv and was unable to figure out to put on a shirt. She and I talked and

we restarted the sinemet and seroquel since stopping those immediately preceded

this abrupt and severe turn for the worse. By bedtime he was able to follow tv

a bit.

Today he still cannot read more than a word or two but is able to follow TV. I

didn't inquire about exactly what else is there or missing but we did chat on

the phone and the conversation seemed fairly normal (the newer normal).

This whole process is so disturbing and frustrating. I am worried and know that

the future from here is very unpleasant but not wanting to frighten my family

but help them be realistic as well. My dad asked me how long people with this

live and I told him 10 years. I don't think that's accurate but I don't know

how long anyone will live and I didn't want to frighten him. I don't want to

practice medicine for my dad but I don't want docs to be stupid either.

ARGHHH! Thanks for letting me vent. This is tough.

My mother lives about 4 hours in the opposite direction from my father (I live

about midway between them). She lives by herself (but my sister lives nearby)

and has early signs of dementia but nothing severe yet. She is driving my

sister crazy at times. My husband's parents live about 10 hours away in

assisted living. His father has severe alzheimer disease and his mother has

parkinson disease and severe osteoporosis with compression fractures. She is

mentally at about 1/2 speed. I have a 16 year old daughter at home and I

practice full time in a stressful profession.

Cheryl

Fayetteville, AR

[Guest guest]

Hi, Cheryl. It must be incredible frustrating to be a physician and be in

this position. I'm an IT Project Manager and used to being in control most

of the time and I had to learn that this was something for which I could

neither predict its path, nor control the future.

As for life expectancy, my belief is that it is nearly impossible to

predict. It is very hard to pinpoint the start of LBD. My 3 sisters and I

still disagree about when it started for Mom, but as Mom lived with me, I'm

sure I'm right and everyone else is wrong. With the diagnosis being mostly

clinical, it depends on observations by the physician, the family and

friends. Things that we might just think of as nervousness or aging might

very well be the beginning of LBD. So pinpointing the start or trying to

predict life expectancy is, I think, an exercise in futility. And, if you

and your father are very lucky, something else will take him before LBD

does. We were lucky and, as we had Mom on palliative care, pneumonia took

her a month ago, very quickly, just as she appeared to be starting to lose

control of her hands (beyond tremors which she had for decades).

Have you checked the www.lbda.org website? There is a section that is

specifically for professionals and I think you will find the information

helpful. There are also a lot of medical professionals on the Discussion

Forums who are also dealing with caregiving. Some of them also participate

on this list. Don't worry about asking questions or making suggestions

that only make sense to a medical professional. People respond to what

speaks to them and I imagine there is a very special set of worries and

frustrations for those with the training to heal.

And yes, as in every profession, it is sometimes hard to find medical care

from someone who can understand the situation and help you with issues. In

many cases, you will end up educating the people you believe are the

specialists. There is so much information starting to come out and so much

more to be learned that I don't think any one person knows everything.

And, even those who you do provide information to can make mistakes. When

my mom was in the hospital with broken shoulders, the staff doctor gave her

Haldol (in the night when we weren't there to advise her), despite my

having her LBD diagnosis put in her chart and providing the LBDA fact sheet

(also asking that it be in her chart) that very specifically identifies

dangerous meds for people with LBD. More than ever before, I've come to

see medicine as an art, with science as a tool.

Working in IT, family and friends expect me to be able to fix their

computers. I can't. I'm a project specialist, not a firmware

specialist. Though the family physician plays (I think) the critical role

of first consultation and bringing everything provided by other

professionals together for the patient to understand, it is so important

for you to accept that, even as a physician, you need help to deal with

this.

As you are in Fayetteville, can I assume you have access to the

University? Is there memory research in progress there? You might find

someone who can help you there. Here in Minnesota, my mom's diagnosis was

made at the University's Memory Clinic by Dr. J.R. McCarten, who practices

there with Dr. Ashe, much in the press lately for her research.

Also, check with the University's School of Public Health or Nursing. I

have been in a great deal of contact with Joe Gaugler, Ph.D. and his

research staff, also known for their work in caring for the caregiver. I

recently participated in a research study with them. Wouldn't it be

interesting to do a research study on caring for the caregiver who is also

a medical professional?

Laurel? Judy? Robin? I'll bet you have things you can share with Cheryl

that we non-medical caregivers have never even thought of.

Best wishes, Cheryl.

Kate

> **

>

>

> I've been lurking for a bit and reading posts. ly, I'm not thrilled

> to have the qualifications to be on this list.

> My father, Bill, who is 85 and previously a chemical engineer lives

> several hundred miles from me with my stepmother, Pat. My dad has LBD. He

> has had symptoms for several years....drooling, stiffness, worsening

> balance and increasing falls, severe constipation and mildly slower

> thinking. He had a long history of wild dreams...to the point that Dad and

> Pat had slept in separate rooms due to his acting out his dreams. I am a

> family doctor but try not to practice on any family members but on thinking

> about his symptoms, I contacted his doc who is a friend of mine and told

> him what I thought was occurring (LBD). I hoped that I was wrong although

> he agreed. In March of 2011 Dad called me to tell me very matter of factly

> that he was having visual hallucinations. A disturbing call to be sure.

>

> I went with my dad to a neurologist visit this fall and told the doc what

> I thought was going on. Unfortunately, that neurologist was not helpful. It

> was interesting and disturbing to be on the other side of the unhelpful

> consult. Anyway, he tried low dose sinemet with no discerable improvement

> but lots of nausea.

>

> Dad finally saw a different neurologist last month who correctly diagnosed

> him with LBD and started him on higher dose sinemet and low dose seroquel.

> He is VERY unsteady with very frequent falls. Dad was not able to sleep at

> this point which was very disturbing. The higher dose of sinemet caused

> nausea and the seroquel caused a bit too much sedation but at least he was

> sleeping but when I would talk with him things sounded stable. He still has

> hallucinations but they are not disturbing to him for the most part.

>

> He went back to the neurologist this week and apparently complained of

> side effects and she asked him if the meds were helping. He said no, so

> apparently she stopped both meds on Thurday.

>

> Friday am while at my office seeing patients I got a call from dad that

> his hand was drawing and numb and that his leg felt numb also. I thought

> this could be a stroke and told him to go immediately to the er. They dxed

> a muscle spasm and sent him home after a ct scan was normal. (The thought

> passed thru my mind...which is worse....LBD vs passing away from a stroke).

>

> Yesterday (the next day) I got a very worried call from Pat. Abruptly that

> morning, Dad had no idea what medications he was taking, could not read (he

> has continued to read up until now as a major source of pleasure to him),

> could not watch tv and was unable to figure out to put on a shirt. She and

> I talked and we restarted the sinemet and seroquel since stopping those

> immediately preceded this abrupt and severe turn for the worse. By bedtime

> he was able to follow tv a bit.

>

> Today he still cannot read more than a word or two but is able to follow

> TV. I didn't inquire about exactly what else is there or missing but we did

> chat on the phone and the conversation seemed fairly normal (the newer

> normal).

>

> This whole process is so disturbing and frustrating. I am worried and know

> that the future from here is very unpleasant but not wanting to frighten my

> family but help them be realistic as well. My dad asked me how long people

> with this live and I told him 10 years. I don't think that's accurate but I

> don't know how long anyone will live and I didn't want to frighten him. I

> don't want to practice medicine for my dad but I don't want docs to be

> stupid either.

>

> ARGHHH! Thanks for letting me vent. This is tough.

> My mother lives about 4 hours in the opposite direction from my father (I

> live about midway between them). She lives by herself (but my sister lives

> nearby) and has early signs of dementia but nothing severe yet. She is

> driving my sister crazy at times. My husband's parents live about 10 hours

> away in assisted living. His father has severe alzheimer disease and his

> mother has parkinson disease and severe osteoporosis with compression

> fractures. She is mentally at about 1/2 speed. I have a 16 year old

> daughter at home and I practice full time in a stressful profession.

>

> Cheryl

> Fayetteville, AR

>

>

>

--

Kate Knapp, OIT

University of Minnesota

You were born with certain gifts and talents.

In kindergarten you were taught to share.

The world needs all of the gifts it can get.

Don’t be shy.

[Guest guest]

Hi, Cheryl. It must be incredible frustrating to be a physician and be in

this position. I'm an IT Project Manager and used to being in control most

of the time and I had to learn that this was something for which I could

neither predict its path, nor control the future.

As for life expectancy, my belief is that it is nearly impossible to

predict. It is very hard to pinpoint the start of LBD. My 3 sisters and I

still disagree about when it started for Mom, but as Mom lived with me, I'm

sure I'm right and everyone else is wrong. With the diagnosis being mostly

clinical, it depends on observations by the physician, the family and

friends. Things that we might just think of as nervousness or aging might

very well be the beginning of LBD. So pinpointing the start or trying to

predict life expectancy is, I think, an exercise in futility. And, if you

and your father are very lucky, something else will take him before LBD

does. We were lucky and, as we had Mom on palliative care, pneumonia took

her a month ago, very quickly, just as she appeared to be starting to lose

control of her hands (beyond tremors which she had for decades).

Have you checked the www.lbda.org website? There is a section that is

specifically for professionals and I think you will find the information

helpful. There are also a lot of medical professionals on the Discussion

Forums who are also dealing with caregiving. Some of them also participate

on this list. Don't worry about asking questions or making suggestions

that only make sense to a medical professional. People respond to what

speaks to them and I imagine there is a very special set of worries and

frustrations for those with the training to heal.

And yes, as in every profession, it is sometimes hard to find medical care

from someone who can understand the situation and help you with issues. In

many cases, you will end up educating the people you believe are the

specialists. There is so much information starting to come out and so much

more to be learned that I don't think any one person knows everything.

And, even those who you do provide information to can make mistakes. When

my mom was in the hospital with broken shoulders, the staff doctor gave her

Haldol (in the night when we weren't there to advise her), despite my

having her LBD diagnosis put in her chart and providing the LBDA fact sheet

(also asking that it be in her chart) that very specifically identifies

dangerous meds for people with LBD. More than ever before, I've come to

see medicine as an art, with science as a tool.

Working in IT, family and friends expect me to be able to fix their

computers. I can't. I'm a project specialist, not a firmware

specialist. Though the family physician plays (I think) the critical role

of first consultation and bringing everything provided by other

professionals together for the patient to understand, it is so important

for you to accept that, even as a physician, you need help to deal with

this.

As you are in Fayetteville, can I assume you have access to the

University? Is there memory research in progress there? You might find

someone who can help you there. Here in Minnesota, my mom's diagnosis was

made at the University's Memory Clinic by Dr. J.R. McCarten, who practices

there with Dr. Ashe, much in the press lately for her research.

Also, check with the University's School of Public Health or Nursing. I

have been in a great deal of contact with Joe Gaugler, Ph.D. and his

research staff, also known for their work in caring for the caregiver. I

recently participated in a research study with them. Wouldn't it be

interesting to do a research study on caring for the caregiver who is also

a medical professional?

Laurel? Judy? Robin? I'll bet you have things you can share with Cheryl

that we non-medical caregivers have never even thought of.

Best wishes, Cheryl.

Kate

> **

>

>

> I've been lurking for a bit and reading posts. ly, I'm not thrilled

> to have the qualifications to be on this list.

> My father, Bill, who is 85 and previously a chemical engineer lives

> several hundred miles from me with my stepmother, Pat. My dad has LBD. He

> has had symptoms for several years....drooling, stiffness, worsening

> balance and increasing falls, severe constipation and mildly slower

> thinking. He had a long history of wild dreams...to the point that Dad and

> Pat had slept in separate rooms due to his acting out his dreams. I am a

> family doctor but try not to practice on any family members but on thinking

> about his symptoms, I contacted his doc who is a friend of mine and told

> him what I thought was occurring (LBD). I hoped that I was wrong although

> he agreed. In March of 2011 Dad called me to tell me very matter of factly

> that he was having visual hallucinations. A disturbing call to be sure.

>

> I went with my dad to a neurologist visit this fall and told the doc what

> I thought was going on. Unfortunately, that neurologist was not helpful. It

> was interesting and disturbing to be on the other side of the unhelpful

> consult. Anyway, he tried low dose sinemet with no discerable improvement

> but lots of nausea.

>

> Dad finally saw a different neurologist last month who correctly diagnosed

> him with LBD and started him on higher dose sinemet and low dose seroquel.

> He is VERY unsteady with very frequent falls. Dad was not able to sleep at

> this point which was very disturbing. The higher dose of sinemet caused

> nausea and the seroquel caused a bit too much sedation but at least he was

> sleeping but when I would talk with him things sounded stable. He still has

> hallucinations but they are not disturbing to him for the most part.

>

> He went back to the neurologist this week and apparently complained of

> side effects and she asked him if the meds were helping. He said no, so

> apparently she stopped both meds on Thurday.

>

> Friday am while at my office seeing patients I got a call from dad that

> his hand was drawing and numb and that his leg felt numb also. I thought

> this could be a stroke and told him to go immediately to the er. They dxed

> a muscle spasm and sent him home after a ct scan was normal. (The thought

> passed thru my mind...which is worse....LBD vs passing away from a stroke).

>

> Yesterday (the next day) I got a very worried call from Pat. Abruptly that

> morning, Dad had no idea what medications he was taking, could not read (he

> has continued to read up until now as a major source of pleasure to him),

> could not watch tv and was unable to figure out to put on a shirt. She and

> I talked and we restarted the sinemet and seroquel since stopping those

> immediately preceded this abrupt and severe turn for the worse. By bedtime

> he was able to follow tv a bit.

>

> Today he still cannot read more than a word or two but is able to follow

> TV. I didn't inquire about exactly what else is there or missing but we did

> chat on the phone and the conversation seemed fairly normal (the newer

> normal).

>

> This whole process is so disturbing and frustrating. I am worried and know

> that the future from here is very unpleasant but not wanting to frighten my

> family but help them be realistic as well. My dad asked me how long people

> with this live and I told him 10 years. I don't think that's accurate but I

> don't know how long anyone will live and I didn't want to frighten him. I

> don't want to practice medicine for my dad but I don't want docs to be

> stupid either.

>

> ARGHHH! Thanks for letting me vent. This is tough.

> My mother lives about 4 hours in the opposite direction from my father (I

> live about midway between them). She lives by herself (but my sister lives

> nearby) and has early signs of dementia but nothing severe yet. She is

> driving my sister crazy at times. My husband's parents live about 10 hours

> away in assisted living. His father has severe alzheimer disease and his

> mother has parkinson disease and severe osteoporosis with compression

> fractures. She is mentally at about 1/2 speed. I have a 16 year old

> daughter at home and I practice full time in a stressful profession.

>

> Cheryl

> Fayetteville, AR

>

>

>

--

Kate Knapp, OIT

University of Minnesota

You were born with certain gifts and talents.

In kindergarten you were taught to share.

The world needs all of the gifts it can get.

Don’t be shy.

[Guest guest]

Hi, Cheryl. It must be incredible frustrating to be a physician and be in

this position. I'm an IT Project Manager and used to being in control most

of the time and I had to learn that this was something for which I could

neither predict its path, nor control the future.

As for life expectancy, my belief is that it is nearly impossible to

predict. It is very hard to pinpoint the start of LBD. My 3 sisters and I

still disagree about when it started for Mom, but as Mom lived with me, I'm

sure I'm right and everyone else is wrong. With the diagnosis being mostly

clinical, it depends on observations by the physician, the family and

friends. Things that we might just think of as nervousness or aging might

very well be the beginning of LBD. So pinpointing the start or trying to

predict life expectancy is, I think, an exercise in futility. And, if you

and your father are very lucky, something else will take him before LBD

does. We were lucky and, as we had Mom on palliative care, pneumonia took

her a month ago, very quickly, just as she appeared to be starting to lose

control of her hands (beyond tremors which she had for decades).

Have you checked the www.lbda.org website? There is a section that is

specifically for professionals and I think you will find the information

helpful. There are also a lot of medical professionals on the Discussion

Forums who are also dealing with caregiving. Some of them also participate

on this list. Don't worry about asking questions or making suggestions

that only make sense to a medical professional. People respond to what

speaks to them and I imagine there is a very special set of worries and

frustrations for those with the training to heal.

And yes, as in every profession, it is sometimes hard to find medical care

from someone who can understand the situation and help you with issues. In

many cases, you will end up educating the people you believe are the

specialists. There is so much information starting to come out and so much

more to be learned that I don't think any one person knows everything.

And, even those who you do provide information to can make mistakes. When

my mom was in the hospital with broken shoulders, the staff doctor gave her

Haldol (in the night when we weren't there to advise her), despite my

having her LBD diagnosis put in her chart and providing the LBDA fact sheet

(also asking that it be in her chart) that very specifically identifies

dangerous meds for people with LBD. More than ever before, I've come to

see medicine as an art, with science as a tool.

Working in IT, family and friends expect me to be able to fix their

computers. I can't. I'm a project specialist, not a firmware

specialist. Though the family physician plays (I think) the critical role

of first consultation and bringing everything provided by other

professionals together for the patient to understand, it is so important

for you to accept that, even as a physician, you need help to deal with

this.

As you are in Fayetteville, can I assume you have access to the

University? Is there memory research in progress there? You might find

someone who can help you there. Here in Minnesota, my mom's diagnosis was

made at the University's Memory Clinic by Dr. J.R. McCarten, who practices

there with Dr. Ashe, much in the press lately for her research.

Also, check with the University's School of Public Health or Nursing. I

have been in a great deal of contact with Joe Gaugler, Ph.D. and his

research staff, also known for their work in caring for the caregiver. I

recently participated in a research study with them. Wouldn't it be

interesting to do a research study on caring for the caregiver who is also

a medical professional?

Laurel? Judy? Robin? I'll bet you have things you can share with Cheryl

that we non-medical caregivers have never even thought of.

Best wishes, Cheryl.

Kate

> **

>

>

> I've been lurking for a bit and reading posts. ly, I'm not thrilled

> to have the qualifications to be on this list.

> My father, Bill, who is 85 and previously a chemical engineer lives

> several hundred miles from me with my stepmother, Pat. My dad has LBD. He

> has had symptoms for several years....drooling, stiffness, worsening

> balance and increasing falls, severe constipation and mildly slower

> thinking. He had a long history of wild dreams...to the point that Dad and

> Pat had slept in separate rooms due to his acting out his dreams. I am a

> family doctor but try not to practice on any family members but on thinking

> about his symptoms, I contacted his doc who is a friend of mine and told

> him what I thought was occurring (LBD). I hoped that I was wrong although

> he agreed. In March of 2011 Dad called me to tell me very matter of factly

> that he was having visual hallucinations. A disturbing call to be sure.

>

> I went with my dad to a neurologist visit this fall and told the doc what

> I thought was going on. Unfortunately, that neurologist was not helpful. It

> was interesting and disturbing to be on the other side of the unhelpful

> consult. Anyway, he tried low dose sinemet with no discerable improvement

> but lots of nausea.

>

> Dad finally saw a different neurologist last month who correctly diagnosed

> him with LBD and started him on higher dose sinemet and low dose seroquel.

> He is VERY unsteady with very frequent falls. Dad was not able to sleep at

> this point which was very disturbing. The higher dose of sinemet caused

> nausea and the seroquel caused a bit too much sedation but at least he was

> sleeping but when I would talk with him things sounded stable. He still has

> hallucinations but they are not disturbing to him for the most part.

>

> He went back to the neurologist this week and apparently complained of

> side effects and she asked him if the meds were helping. He said no, so

> apparently she stopped both meds on Thurday.

>

> Friday am while at my office seeing patients I got a call from dad that

> his hand was drawing and numb and that his leg felt numb also. I thought

> this could be a stroke and told him to go immediately to the er. They dxed

> a muscle spasm and sent him home after a ct scan was normal. (The thought

> passed thru my mind...which is worse....LBD vs passing away from a stroke).

>

> Yesterday (the next day) I got a very worried call from Pat. Abruptly that

> morning, Dad had no idea what medications he was taking, could not read (he

> has continued to read up until now as a major source of pleasure to him),

> could not watch tv and was unable to figure out to put on a shirt. She and

> I talked and we restarted the sinemet and seroquel since stopping those

> immediately preceded this abrupt and severe turn for the worse. By bedtime

> he was able to follow tv a bit.

>

> Today he still cannot read more than a word or two but is able to follow

> TV. I didn't inquire about exactly what else is there or missing but we did

> chat on the phone and the conversation seemed fairly normal (the newer

> normal).

>

> This whole process is so disturbing and frustrating. I am worried and know

> that the future from here is very unpleasant but not wanting to frighten my

> family but help them be realistic as well. My dad asked me how long people

> with this live and I told him 10 years. I don't think that's accurate but I

> don't know how long anyone will live and I didn't want to frighten him. I

> don't want to practice medicine for my dad but I don't want docs to be

> stupid either.

>

> ARGHHH! Thanks for letting me vent. This is tough.

> My mother lives about 4 hours in the opposite direction from my father (I

> live about midway between them). She lives by herself (but my sister lives

> nearby) and has early signs of dementia but nothing severe yet. She is

> driving my sister crazy at times. My husband's parents live about 10 hours

> away in assisted living. His father has severe alzheimer disease and his

> mother has parkinson disease and severe osteoporosis with compression

> fractures. She is mentally at about 1/2 speed. I have a 16 year old

> daughter at home and I practice full time in a stressful profession.

>

> Cheryl

> Fayetteville, AR

>

>

>

--

Kate Knapp, OIT

University of Minnesota

You were born with certain gifts and talents.

In kindergarten you were taught to share.

The world needs all of the gifts it can get.

Don’t be shy.