To see a doc or not to see a doc

[Guest guest]

OK, so around a year or so ago, we insisted my father have a check up for his

short term memory issues. They did an MRI, complete cardio check, blood work,

the whole nine yards. Now, his symptoms have progressed to where dementia is

obvious (very likely LBD), though the catalyst is, of course, unknown. The

family doc/GP has referred him to a neurologist in the large group practice in

this metro-Dallas area. The problem: My folks are very dubious about the point

of seeing a doctor when Dad (and Mom) mistrust nearly all medications that might

be suggested anyway. To make things increasingly touchy, the referred doctor in

the group is Syrian and completely Syrian educated until he came to the US to

join family and friends in this area. Sorry, but this is NOT going to fly with

my 80 year old parents.

I understand that Dad is ill and needs a physician, in the most basic

perspective, though I am not sure what ultimate good it would do. The tests a

year ago ruled out (at that time) any tumor on the brain, vascular issues, or

such things as can be found. I know that I could just find a geriatric

neurologist or doc who comes recommended by a patient/family, but it is likely

to be a long drive to somewhere in the city and I know my folks won't thrill to

that (and I wonder again...to what end?)

Am I just being cynical? realistic? lazy? what do you think or what would you

do? Thanks -Ida

[Guest guest]

Ida,

I live in Dallas and my Mother had LBD. A knowledgeable doctor can make a world

of difference. We took my Mother to F. Vobach, MD. He's a geriatric

psychiatrist. He's very knowledgeable about the drugs used to treat LBD. He's

very American, but he is a psychiatrist, so I'm not sure how you parents would

react. We saw him at the downtown Baylor location, but he may have other

offices.

in Dallas

>

> OK, so around a year or so ago, we insisted my father have a check up for his

short term memory issues. They did an MRI, complete cardio check, blood work,

the whole nine yards. Now, his symptoms have progressed to where dementia is

obvious (very likely LBD), though the catalyst is, of course, unknown. The

family doc/GP has referred him to a neurologist in the large group practice in

this metro-Dallas area. The problem: My folks are very dubious about the point

of seeing a doctor when Dad (and Mom) mistrust nearly all medications that might

be suggested anyway. To make things increasingly touchy, the referred doctor in

the group is Syrian and completely Syrian educated until he came to the US to

join family and friends in this area. Sorry, but this is NOT going to fly with

my 80 year old parents.

>

> I understand that Dad is ill and needs a physician, in the most basic

perspective, though I am not sure what ultimate good it would do. The tests a

year ago ruled out (at that time) any tumor on the brain, vascular issues, or

such things as can be found. I know that I could just find a geriatric

neurologist or doc who comes recommended by a patient/family, but it is likely

to be a long drive to somewhere in the city and I know my folks won't thrill to

that (and I wonder again...to what end?)

>

> Am I just being cynical? realistic? lazy? what do you think or what would you

do? Thanks -Ida

>

[Guest guest]

You should definitely have your father see a Lewy-savvy doctor -- here's some in

Dallas area:

Alzheimer's Disease Center, University of Texas, Southwestern Medical Center

Ramon -Arrastia, MD, PhD

N. Rosenberg, MD, Director

Womack, MD

B. Dewey, MD 

Hart, Jr., MD

Laurie Rilling, PhD

Myron Weiner, MD

>

> OK, so around a year or so ago, we insisted my father have a check up for his

short term memory issues. They did an MRI, complete cardio check, blood work,

the whole nine yards. Now, his symptoms have progressed to where dementia is

obvious (very likely LBD), though the catalyst is, of course, unknown. The

family doc/GP has referred him to a neurologist in the large group practice in

this metro-Dallas area. The problem: My folks are very dubious about the point

of seeing a doctor when Dad (and Mom) mistrust nearly all medications that might

be suggested anyway. To make things increasingly touchy, the referred doctor in

the group is Syrian and completely Syrian educated until he came to the US to

join family and friends in this area. Sorry, but this is NOT going to fly with

my 80 year old parents.

>

> I understand that Dad is ill and needs a physician, in the most basic

perspective, though I am not sure what ultimate good it would do. The tests a

year ago ruled out (at that time) any tumor on the brain, vascular issues, or

such things as can be found. I know that I could just find a geriatric

neurologist or doc who comes recommended by a patient/family, but it is likely

to be a long drive to somewhere in the city and I know my folks won't thrill to

that (and I wonder again...to what end?)

>

> Am I just being cynical? realistic? lazy? what do you think or what would you

do? Thanks -Ida

>

[Guest guest]

We are minimum medication adherents so I can empathize with your parents.  I do

think a good neurologist would be helpful in managing symptoms.  The doctor we

see is very agreeable to the concept that the less meds needed the better.  So

if you found someone like this your parents might be willing to try.  We want

to keep our LO's as mobile as possible and as coherent as can be accomplished so

medications help with this and help us manage care better and longer in our own

homes.  These are the reasons I would propose to your parents in getting them

to be agreeable to seeing a neurologist.  Good luck in finding one that has

your values.  I think we are lucky in this respect.  He is very respectful of

the patient and caregiver and listens to our concerns and observations.  He

doesn't act like " a god " . Rare find. Blessings, Ruth Ann

 

Ruth Ann G. caregiver age 70 Husband Lee age 73 with LBD. Retired EE Engr.

Professor. Diagnosed 2006 with LBD at Cleveland Clinic. Phase II

________________________________

To: LBDcaregivers

Sent: Tuesday, May 24, 2011 5:32 AM

Subject: Re: To see a doc or not to see a doc

 

You should definitely have your father see a Lewy-savvy doctor -- here's some in

Dallas area:

Alzheimer's Disease Center, University of Texas, Southwestern Medical Center

Ramon -Arrastia, MD, PhD

N. Rosenberg, MD, Director

Womack, MD

B. Dewey, MD 

Hart, Jr., MD

Laurie Rilling, PhD

Myron Weiner, MD

>

> OK, so around a year or so ago, we insisted my father have a check up for his

short term memory issues. They did an MRI, complete cardio check, blood work,

the whole nine yards. Now, his symptoms have progressed to where dementia is

obvious (very likely LBD), though the catalyst is, of course, unknown. The

family doc/GP has referred him to a neurologist in the large group practice in

this metro-Dallas area. The problem: My folks are very dubious about the point

of seeing a doctor when Dad (and Mom) mistrust nearly all medications that might

be suggested anyway. To make things increasingly touchy, the referred doctor in

the group is Syrian and completely Syrian educated until he came to the US to

join family and friends in this area. Sorry, but this is NOT going to fly with

my 80 year old parents.

>

> I understand that Dad is ill and needs a physician, in the most basic

perspective, though I am not sure what ultimate good it would do. The tests a

year ago ruled out (at that time) any tumor on the brain, vascular issues, or

such things as can be found. I know that I could just find a geriatric

neurologist or doc who comes recommended by a patient/family, but it is likely

to be a long drive to somewhere in the city and I know my folks won't thrill to

that (and I wonder again...to what end?)

>

> Am I just being cynical? realistic? lazy? what do you think or what would you

do? Thanks -Ida

>

[Guest guest]

I agree, it made all the difference for my mother in law (and my husband and I

who care for her), who was finally properly diagnosed (as much as can be) when

we took her to see a doctor at the Memory and Aging Clinic in San Francisco.

These type of centers have to top doctors practicing and researching these

diseases and they really know their stuff. Before we went there we were limited

to her gp and a small town neurologist who was not up on things and prescribed

heavy duty medications that made things MUCH worse and caused stiffness and

shaking and inability to walk, incontinence, confusion, agitation,

hallucinations and so on. We got her off all those medicines then added only a

couple of mild things one at a time and have a fairly good balance still. Her

neurologist at UCSF only sees here as needed or once a year and consults with

her internist about medications and managing new symptoms. We have seen very

little change in her medications and she is late stage now. Many of the

hallucinations we are able to manage by talking about them. If someone is

telling her they need money I tell her to please ask them to come and see me and

I’ll be glad to help them. The hardest time we are having now is the anxiety

each time she realizes she is ill and as she says, “dying†. Also she gets

very anxious about where her son is and keeps telling everyone she’s taking

him with her. A few times lately the anxiety attacks have been very severe and

we have had to use the emergency ativan in a tiny dose (liquid form so we can

dose super low) and that helps some and talking helps the rest of it. For my

mother in law, just 0 .175 ml is enough to help her calm but just that – it

doesn’t nothing else and doesn’t knock her out like happens with the pill

form and other drugs. The one thing her neurologist at UCSF prescribed that no

other doctor did was “aggressive physical therapyâ€. And I took that like

gospel and kept her in pt as long as possible then exercised with her every day

and had anyone who helped with caregiving do the same. She is still walking

though barely and last week we decided we weren’t going to force exercise

anymore, it got to be too hard. But I can see how much all that exercise did

for her still and it was a very good investment.

Your father would do best to see a neurologist at the Alzheimer’s Center in

the Dallas area as those are the ones who are going to be minimal on

medications. They usually really appreciate family members accompanying

patients to the appointments, especially the initial one to get a feel for what

might be going on. They might want to ask family members about history, when

you first noticed certain things and so one. All that information helps a great

deal.

Also, there are a few medications that could help your father right now keep his

mind a bit clearer longer. Exelon patch is one and he should be given a chance

to try it and see if he tolerates it well – and if so it should improve his

thinking quite a lot.

Good luck J

Dorothy

________________________________

From: <octoryrose@... <mailto:octoryrose%40yahoo.com> >

To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

Sent: Tuesday, May 24, 2011 5:32 AM

Subject: Re: To see a doc or not to see a doc

You should definitely have your father see a Lewy-savvy doctor -- here's some in

Dallas area:

Alzheimer's Disease Center, University of Texas, Southwestern Medical Center

Ramon -Arrastia, MD, PhD

N. Rosenberg, MD, Director

Womack, MD

B. Dewey, MD

Hart, Jr., MD

Laurie Rilling, PhD

Myron Weiner, MD

>

> OK, so around a year or so ago, we insisted my father have a check up for his

short term memory issues. They did an MRI, complete cardio check, blood work,

the whole nine yards. Now, his symptoms have progressed to where dementia is

obvious (very likely LBD), though the catalyst is, of course, unknown. The

family doc/GP has referred him to a neurologist in the large group practice in

this metro-Dallas area. The problem: My folks are very dubious about the point

of seeing a doctor when Dad (and Mom) mistrust nearly all medications that might

be suggested anyway. To make things increasingly touchy, the referred doctor in

the group is Syrian and completely Syrian educated until he came to the US to

join family and friends in this area. Sorry, but this is NOT going to fly with

my 80 year old parents.

>

> I understand that Dad is ill and needs a physician, in the most basic

perspective, though I am not sure what ultimate good it would do. The tests a

year ago ruled out (at that time) any tumor on the brain, vascular issues, or

such things as can be found. I know that I could just find a geriatric

neurologist or doc who comes recommended by a patient/family, but it is likely

to be a long drive to somewhere in the city and I know my folks won't thrill to

that (and I wonder again...to what end?)

>

> Am I just being cynical? realistic? lazy? what do you think or what would you

do? Thanks -Ida

>

[Guest guest]

Last year my mother became severely anemic and ended up in the hospital - we

discovered she had a bleeding ulcer.

She was in the hospital/rehab facility for 3 1/2 weeks and despite the fact that

I gave the administrators the list of meds (from this group) that should be

avoided, she ended up on Tramadol. I only discovered this when I sat with the

nurse one day and was going over her meds. Mom was very confused, agitated,

disoriented and paranoid while in the hospital, and was having upsetting and

scary hallucinations. It was very distressing for all of us and so hard to see

her like this.

Once we got her off the Tramadol, it took about 3-4 weeks for her to get over

the confusion -- I guess it's all relative, since she can be confused and have

hallucinations on good days. At the same time she was started on an

anti-depressant and that seemed to help her demeanor tremendously. Her spirits

picked up and she returned to her old self.

I can only speak for my mom, as she has sensitivities to certain drugs like

Tramadol and Seraquel, but the only pain med I feel comfortable giving her now

is Tylenol.

My mother was diagnosed with Lewy Body a little over two years ago. She is

currently in assisted living in Fl.

Debra

>

> OK, so around a year or so ago, we insisted my father have a check up for his

short term memory issues. They did an MRI, complete cardio check, blood work,

the whole nine yards. Now, his symptoms have progressed to where dementia is

obvious (very likely LBD), though the catalyst is, of course, unknown. The

family doc/GP has referred him to a neurologist in the large group practice in

this metro-Dallas area. The problem: My folks are very dubious about the point

of seeing a doctor when Dad (and Mom) mistrust nearly all medications that might

be suggested anyway. To make things increasingly touchy, the referred doctor in

the group is Syrian and completely Syrian educated until he came to the US to

join family and friends in this area. Sorry, but this is NOT going to fly with

my 80 year old parents.

>

> I understand that Dad is ill and needs a physician, in the most basic

perspective, though I am not sure what ultimate good it would do. The tests a

year ago ruled out (at that time) any tumor on the brain, vascular issues, or

such things as can be found. I know that I could just find a geriatric

neurologist or doc who comes recommended by a patient/family, but it is likely

to be a long drive to somewhere in the city and I know my folks won't thrill to

that (and I wonder again...to what end?)

>

> Am I just being cynical? realistic? lazy? what do you think or what would you

do? Thanks -Ida

>