Re: Carol - Re: Second Opinion?

[Guest guest]

noted:

You will find that outside of psychologist or neurologist, many

physicians don't even know about LBD.

**************************

Well - our doctor does not even know that much about AD. I think my mom is

likely the first person he has ever seen who has dementia but I could be wrong.

I do know that he listens to closely to my POA oldest sister and she really

knows nothing and dismisses any of the information I send her!!!

Now, sometimes, our doctor is willing to listen to what I have to say. When I

told him I that my mom should be getting checkups more than once a year, he

immediately agreed. Of course, my mom's six-month checkup should have been in

June but my sister never made the appointment. Since my mom went into the

hospital in early July with a UTI, I doubt she will be seeing our doctor until

next December!!!! I did once schedule an appointment for my mother with a

neurologist at the Northwestern University ADRC and forced my sister to keep the

appointment but that was in November, 2001 and I doubt my mom will ever see

another specialist of any stripe.

It is hard when the biggest problems are caused by siblings rather than the

person with dementia!

As I said last night, based on the few things I have looked at so far, my mom is

in the " possible LBD " category since she only has the Parkinson's symptoms so I

do not know how hard I should push for her to see someone who might be able to

definitively give us a diagnosis. . .

carol

[Guest guest]

Hi Carol,

My name is Gwen and I have been 24/7 caregiver for my father for the last 2

years. I live in Naperville but have been living with my dad in New York. I

have been trying to catch up on about 10 days of posts because last week I moved

my dad from New York to Naperville to assisted living. I see that you are from

Chicago and wanted to wish you a warm welcome. I understand about sisters!#$%.

(One of the reasons that I moved dad to IL.) I guess that your sister doesn't

realize that she has some of the best neurologists in the world right in

Chicago! I also get digest email from the National Parkinson's foundation where

they often talk about LBD. For folks in Chicago area, neurologists at Rush

Presbyterian are often recommended. My husband's neurosurgeon is at Rush and I

felt that he is very good. I am currently looking for a new neuro for my dad in

the Naperville area to start. I have a hard time getting dad to go to any

doctors but I am pushing for this now that I can just put him in the wheelchair

and take him. While he was in his own home it was really hard. He had 2

flights of stairs he had to try to navigate and he has gotten to the point where

he couldn't do it besides the fact that he did want to do it. My dad does not

have a definite diagnosis of LBD but it was tentatively diagnosed 2 years ago.

I don't remember if I saw email on any medications that your mom is taking. Is

she taking any for the Parkinson's symptoms? My dad's PCP diagnosed AD and had

him on lexapro and aricept. He refused to acknowledge the parkinson's symptoms.

Seeing a neurologist can help to rule out many things and I for one was

interested to find out what was wrong with dad's walking. The AD diagnosis just

didn't feel right. Maybe this is how you are feeling. I would make an

appointment with a neurologist and take your mom with or without your sister.

(I've been there.)

Anyway, this started out as a welcome and is getting rather long so again

welcome.

Gwen

Re: Carol - Re: Second Opinion?

noted:

You will find that outside of psychologist or neurologist, many

physicians don't even know about LBD.

**************************

Well - our doctor does not even know that much about AD. I think my mom is

likely the first person he has ever seen who has dementia but I could be wrong.

I do know that he listens to closely to my POA oldest sister and she really

knows nothing and dismisses any of the information I send her!!!

Now, sometimes, our doctor is willing to listen to what I have to say. When I

told him I that my mom should be getting checkups more than once a year, he

immediately agreed. Of course, my mom's six-month checkup should have been in

June but my sister never made the appointment. Since my mom went into the

hospital in early July with a UTI, I doubt she will be seeing our doctor until

next December!!!! I did once schedule an appointment for my mother with a

neurologist at the Northwestern University ADRC and forced my sister to keep the

appointment but that was in November, 2001 and I doubt my mom will ever see

another specialist of any stripe.

It is hard when the biggest problems are caused by siblings rather than the

person with dementia!

As I said last night, based on the few things I have looked at so far, my mom

is in the " possible LBD " category since she only has the Parkinson's symptoms so

I do not know how hard I should push for her to see someone who might be able to

definitively give us a diagnosis. . .

carol

[Guest guest]

Gwen advised:

I would make an appointment with a neurologist and take your mom with or

without your sister.

********************

My mom had at test for PD while she was in the hospital a few weeks ago

(with a bad asymptomatic urinary tract infection!). She tested negative for

the PD but still has PD symtpoms. Last winter, for a few months, my mom was

taking Amantadine when our doctor still thought she had PD but it did not

help her at all. I know of some people who take Sinemet (sp) but understand

this may not help either.

My mom does take Exelon and Namenda among many other drugs including a

diuretic and another drug for high blood pressure that was just started.

She has no adverse reactions to any of her meds (I understand this can be a

problem with LBD) so, for now, anyway, I guess it may not even matter

exactly what dementia she has. She saw a neurologist when she was first

diagnosed in 2000 and then I forced my sister to take my mom to a

neurologist at the Northwestern ADRC in November of 2001. This neurologist

seemed excellent (although I did not go to the appointment - another case of

" if I knew then. . . " ) and he said nothing about LBD although my mom's

Parkinson's-type symptoms were not as prevalent then.

Anyway, I will just leave things as they are for now. If it really seems

like my mom should see another neurologist, I will talk to our doctor and if

he sides with my sister, and says my mom need not see another neurologist, I

would, then, just take her. However, I do not want to do that unless it is

absolutely necessary because the ensuing family fireworks would be

catastrophic and would upset my mom.

Thanks for your welcoming post. I would love to get to Naperville someday

as I understand that downtown Naperville is really pretty and has a covered

bridge. Then, again, I would actually rather be in NYC!!!!!! I lived there

for nine years and would move back in a heartbeat if I could!

carol

[Guest guest]

Carol,

I hear you about starting family fireworks. We do or not do things to try to

keep the peace. Most of the time I function so as not to agitate dad. There

were times when I didn't take dad to drs. because he had had enough with drs.

For a while he had to see his primary, a gastroenterologist and urologist and

when I made the appointment with the neurologist he went but said enough for

going back for recheck. Now he will have a primary and hopefully a neurologist.

Yes, downtown Naperville has a covered bridge. It is pretty, but getting so

crowded with all of the building. When we moved to Naperville almost 30 years

ago there were 26,000 people and now almost all of the farms are gone and pop.

is up to 130,000. It would be nice if you could come to see it. You really

would prefer NYC over the midwest? I haven't been into the city in years. Was

born in the Bronx, but grew up in NJ. Dad's lived in Brewster for 30 years. It

is pretty rural here, but also lots of building. Since 9/11 many people are

moving out of the city. I wouldn't want to be in the city right now, especially

this week with the terror alerts around Wall St. but that is just chicken me.

Maybe once I get things settled for dad we can connect.

Gwen

Re: Carol - Re: Second Opinion?

Gwen advised:

I would make an appointment with a neurologist and take your mom with or

without your sister.

********************

My mom had at test for PD while she was in the hospital a few weeks ago

(with a bad asymptomatic urinary tract infection!). She tested negative for

the PD but still has PD symtpoms. Last winter, for a few months, my mom was

taking Amantadine when our doctor still thought she had PD but it did not

help her at all. I know of some people who take Sinemet (sp) but understand

this may not help either.

My mom does take Exelon and Namenda among many other drugs including a

diuretic and another drug for high blood pressure that was just started.

She has no adverse reactions to any of her meds (I understand this can be a

problem with LBD) so, for now, anyway, I guess it may not even matter

exactly what dementia she has. She saw a neurologist when she was first

diagnosed in 2000 and then I forced my sister to take my mom to a

neurologist at the Northwestern ADRC in November of 2001. This neurologist

seemed excellent (although I did not go to the appointment - another case of

" if I knew then. . . " ) and he said nothing about LBD although my mom's

Parkinson's-type symptoms were not as prevalent then.

Anyway, I will just leave things as they are for now. If it really seems

like my mom should see another neurologist, I will talk to our doctor and if

he sides with my sister, and says my mom need not see another neurologist, I

would, then, just take her. However, I do not want to do that unless it is

absolutely necessary because the ensuing family fireworks would be

catastrophic and would upset my mom.

Thanks for your welcoming post. I would love to get to Naperville someday

as I understand that downtown Naperville is really pretty and has a covered

bridge. Then, again, I would actually rather be in NYC!!!!!! I lived there

for nine years and would move back in a heartbeat if I could!

carol

Welcome to LBDcaregivers.

[Guest guest]

Gwen - Naperville is now the second or third (I forget which) largest

municipality in Illinois!!! Pretty amazing!!!

I have never heard of Brewster - well I have heard of Mortimer Brewster and

his Brewster aunts from " Arsenic and Old Lace " !!!

I try to keep peace in the family but when things have to be done, I make

sure that they are!!!

take care -

carol