Re: Would like opinions, please.

[Guest guest]

Hi

Sounds like less parkinson and more LBD - my mom had andiagnosis of parkinsons

for at least 8 yrs - but the motor decline wAs seen first and then the dementia

moved in soo rapidly that I even predicted the LBD before she was officially

diagnosed app 2 yrs ago-

Another similarity with your husband with LBD patients is

The parkinsons is not marked with as much shaking ( more in line with parkinsons

) and more rigidity and a lack of balance - which made her a big risk for

falling - which in fact she had many of - these resulted in many fractures -

most small but one major at the beginning before the LBD symptoms - a bilateral

shoulder break!

The biggest shock was her neurologists prediction of

The rapid decline into LBD - predicting one and a half years till a tot decline

- which has been right on target --

- I am so sorry about your husband - my heart is with you - u r in the

right place if in fact he has the LBD this support group has been a lifesaver

for me!

Hang in there and keep us posted!!

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 everyone--

>

> I'm new to the group, and maybe don't belong here. Technically, my husband was

diagnosed with Parkinson's 2 years ago, but I've never felt the diagnosis was

acurate. My father has had Parkinson's for 24 years and my husband's symptoms

didn't match up. I'm aware that everyone with Parkinson's is different, but

while I was doing research on PD I came across some articles on LBD and it

seemed to be describing my husband perfectly.

>

> My husband was the most intelligent man I'd ever met. He has a degree in math

and physics, and taught Calculus and physics for several years. When he was in

his early fifties, we noticed a decline in his cognitive abilities. We wrote it

off as " getting older " and didn't worry too much about it, but by age 55 the

decline became more apparent. He began " losing " the car in parking lots and

started having trouble teaching math. He'd start a problem then have to start

over repeatedly because he forgot where he was. We started going to doctors to

find out what was wrong and doctor after doctor came up with different diagnoses

or said, " He's fine. Just getting older. " Finally, we went to the Cleveland

Clinic where he was diagnosed with Parkinson's.

>

> However, his PD symptoms weren't like most people's. He was mostly stiff--very

slight tremor and those symptoms didn't start until after the thinking problems.

Since his diagnosis 2 years ago, I can see major decline in his thinking

abilities particularly where executive functions are concerned.

>

> Has anyone else had this sort of situation? My husband is only 58 years old

and this is heartbreaking for all who know him.

>

>

>

>

[Guest guest]

-

Your situation sounds familiar. My mom was also diagnosed with Parkinson's in

the beginning. She had a slight tremor on one side, walked with a stooped

position, and was falling occasionally. We also noticed problems with her

thinking. She was working, but having more difficulty doing the job she had for

over 20 years. Learning new things was next to impossible. Her undoing was when

the hospital where she worked began using a new computer system. She just

couldn't do it. She had to put notes up around her apartment to remind herself

about appointments and paying her bills and balancing her checkbook was getting

harder and harder. She was showing paranoia and would call someone and then call

them again because she would forget she made the first call. My aunt had to help

her with her medications. She would either not take them or take them at the

wrong time and in the wrong amount. She was also forgetting to eat.

I read about Lewy Body Disease for myself and knew in my gut that was what she

had. The doctor only confirmed it. Many of the things she was doing matched the

things I read about others with LBD. She has hallucinations, visual/spacial

difficulty, Capgras syndrome, difficulty knowing how to get to rooms in her very

tiny apartment, fluctuating cognition.

She continues with motor problems, such as freezing in one spot when she tries

to walk, stiffness, and myoclonic jerks, but those are combined with definite

cognitive problems, which only reinforces the LBD diagnosis.

Keep researching and learning all you can. This site is a great resource for

support and information.Be sure to check out the files section. Pay attention to

the medication information. Changing my mom's meds has made all the difference.

If your husband has LBD, there are certain meds which can be problematic &

possibly dangerous for him.

Ask any question you need answered here. This group is filled with knowledgeable

and compassionate people. Finding this group was a lifesaver for me. We hate for

your sake that you had to find us--Lewy is unforgiving and unrelenting--but

we're glad also that we can be here for you.

Warmly,

Katy; daughter to Jill, age 71

[Guest guest]

>

> Hi everyone--

>

> I'm new to the group, and maybe don't belong here. Technically, my husband was

diagnosed with Parkinson's 2 years ago, but I've never felt the diagnosis was

acurate. My father has had Parkinson's for 24 years and my husband's symptoms

didn't match up. I'm aware that everyone with Parkinson's is different, but

while I was doing research on PD I came across some articles on LBD and it

seemed to be describing my husband perfectly.

>

> My husband was the most intelligent man I'd ever met. He has a degree in math

and physics, and taught Calculus and physics for several years. When he was in

his early fifties, we noticed a decline in his cognitive abilities. We wrote it

off as " getting older " and didn't worry too much about it, but by age 55 the

decline became more apparent. He began " losing " the car in parking lots and

started having trouble teaching math. He'd start a problem then have to start

over repeatedly because he forgot where he was. We started going to doctors to

find out what was wrong and doctor after doctor came up with different diagnoses

or said, " He's fine. Just getting older. " Finally, we went to the Cleveland

Clinic where he was diagnosed with Parkinson's.

>

> However, his PD symptoms weren't like most people's. He was mostly

stiff--very slight tremor and those symptoms didn't start until after the

thinking problems. Since his diagnosis 2 years ago, I can see major decline in

his thinking abilities particularly where executive functions are concerned.

>

> Has anyone else had this sort of situation? My husband is only 58 years old

and this is heartbreaking for all who know him.

>

>

>

Hi ,

Your story could be my story. My DH started showing symptoms from

an early age to. But,he always kept himself in good shape, jogged,

exercised and I think doing that helped delay it some. He was dx with LBD from

the start. I kept him home and cared for him for 10 years, until one day he

developed cellulitis. Had to go to hospital

for treatment...He never did come home again...He was put in rehab, his

condition declined so much he was transferred to a nursing facility. It's been 6

months now and I miss him terribly. I can't

bear to see him in this condition. Its not what he would want for himself.

There is nothing I can do but pray and cry.

[Guest guest]

Welcome ,

I've only been on the website a little over two months. But I've read in

several places that Lewy Body Dementia is more prevalent in men and highly

intelligent people.

At the local group I attend there are several men your husband's age who

also experienced the difficulties doing their job as you describe with your

Dad. I think both were engineers. I've heard their wives say how

important it is to obtain a diagnosis before they leave their jobs. I'm

thinking maybe it has to do with going on disability. I don't know.

My mom was also a highly intelligent person who loved life and was very

active. Physically, she could run circles around most of her children.

She was a teacher and college professor. But now she cannot turn on a

computer, read, write a card, listen to TV, etc.

It is very heartbreaking, but you are in the right place. You will not

feel so alone.

Marcie

_____

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of lcooke57

Sent: Saturday, August 20, 2011 9:31 AM

To: LBDcaregivers

Subject: Would like opinions, please.

Hi everyone--

I'm new to the group, and maybe don't belong here. Technically, my husband

was diagnosed with Parkinson's 2 years ago, but I've never felt the

diagnosis was acurate. My father has had Parkinson's for 24 years and my

husband's symptoms didn't match up. I'm aware that everyone with Parkinson's

is different, but while I was doing research on PD I came across some

articles on LBD and it seemed to be describing my husband perfectly.

My husband was the most intelligent man I'd ever met. He has a degree in

math and physics, and taught Calculus and physics for several years. When he

was in his early fifties, we noticed a decline in his cognitive abilities.

We wrote it off as " getting older " and didn't worry too much about it, but

by age 55 the decline became more apparent. He began " losing " the car in

parking lots and started having trouble teaching math. He'd start a problem

then have to start over repeatedly because he forgot where he was. We

started going to doctors to find out what was wrong and doctor after doctor

came up with different diagnoses or said, " He's fine. Just getting older. "

Finally, we went to the Cleveland Clinic where he was diagnosed with

Parkinson's.

However, his PD symptoms weren't like most people's. He was mostly

stiff--very slight tremor and those symptoms didn't start until after the

thinking problems. Since his diagnosis 2 years ago, I can see major decline

in his thinking abilities particularly where executive functions are

concerned.

Has anyone else had this sort of situation? My husband is only 58 years old

and this is heartbreaking for all who know him.

[Guest guest]

My husband is already on disability, luckily he was still employed when his

symptoms developed. I guess my biggest issue now is if I push his doctors to

rethink his diagnosis. I'm thinking of requesting an appointment with a

neurologist who specializes in dementia the next time we go to the clinic.  His

current doctor specializes in motor disorders which is why I think he landed on

Parkinson's instead of LBD.

 

To: LBDcaregivers

Sent: Saturday, August 20, 2011 12:57 PM

Subject: RE: Would like opinions, please.

 

Welcome ,

I've only been on the website a little over two months. But I've read in

several places that Lewy Body Dementia is more prevalent in men and highly

intelligent people.

At the local group I attend there are several men your husband's age who

also experienced the difficulties doing their job as you describe with your

Dad. I think both were engineers. I've heard their wives say how

important it is to obtain a diagnosis before they leave their jobs. I'm

thinking maybe it has to do with going on disability. I don't know.

My mom was also a highly intelligent person who loved life and was very

active. Physically, she could run circles around most of her children.

She was a teacher and college professor. But now she cannot turn on a

computer, read, write a card, listen to TV, etc.

It is very heartbreaking, but you are in the right place. You will not

feel so alone.

Marcie

_____

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of lcooke57

Sent: Saturday, August 20, 2011 9:31 AM

To: LBDcaregivers

Subject: Would like opinions, please.

Hi everyone--

I'm new to the group, and maybe don't belong here. Technically, my husband

was diagnosed with Parkinson's 2 years ago, but I've never felt the

diagnosis was acurate. My father has had Parkinson's for 24 years and my

husband's symptoms didn't match up. I'm aware that everyone with Parkinson's

is different, but while I was doing research on PD I came across some

articles on LBD and it seemed to be describing my husband perfectly.

My husband was the most intelligent man I'd ever met. He has a degree in

math and physics, and taught Calculus and physics for several years. When he

was in his early fifties, we noticed a decline in his cognitive abilities.

We wrote it off as " getting older " and didn't worry too much about it, but

by age 55 the decline became more apparent. He began " losing " the car in

parking lots and started having trouble teaching math. He'd start a problem

then have to start over repeatedly because he forgot where he was. We

started going to doctors to find out what was wrong and doctor after doctor

came up with different diagnoses or said, " He's fine. Just getting older. "

Finally, we went to the Cleveland Clinic where he was diagnosed with

Parkinson's.

However, his PD symptoms weren't like most people's. He was mostly

stiff--very slight tremor and those symptoms didn't start until after the

thinking problems. Since his diagnosis 2 years ago, I can see major decline

in his thinking abilities particularly where executive functions are

concerned.

Has anyone else had this sort of situation? My husband is only 58 years old

and this is heartbreaking for all who know him.

[Guest guest]

-

Your story sounds familiar: my father was an author and a college professor of

anatomy (the final textbook who wrote was called " The Biology of Aging " . He

began having some physical issues with shoulder pain and orthostatic hypotension

7 years ago, and also had REM sleep disorder including hallucination at night of

" little people " that led to a diagnosis of early LBD. Following a move to a

retirement community in the Cleveland area, he met several times with Dr. Ronan

Factora at the Cleveland Clinic who specializes in the " Aging Brain " . While your

husband is young, his brain may still be helped by Dr. Factora or an associate.

Dr. Factora practices at the Main Campus and the Independence Family Health

Center.

My Dad is nearly immobile and on hospice care now, so we don't take him to see

Dr. Factora anymore. But he was a wonderful resource for us a few years ago.

while he also never " diagnosed LBD " , no matter what the dementia was called he

helped us manage the symptoms.

Good luck to you and keep coming back to this group. It has been so helpful to

me.

Carol, daughter of - diagnosed 2004.

>

> Hi everyone--

>

> I'm new to the group, and maybe don't belong here. Technically, my husband was

diagnosed with Parkinson's 2 years ago, but I've never felt the diagnosis was

acurate. My father has had Parkinson's for 24 years and my husband's symptoms

didn't match up. I'm aware that everyone with Parkinson's is different, but

while I was doing research on PD I came across some articles on LBD and it

seemed to be describing my husband perfectly.

>

> My husband was the most intelligent man I'd ever met. He has a degree in math

and physics, and taught Calculus and physics for several years. When he was in

his early fifties, we noticed a decline in his cognitive abilities. We wrote it

off as " getting older " and didn't worry too much about it, but by age 55 the

decline became more apparent. He began " losing " the car in parking lots and

started having trouble teaching math. He'd start a problem then have to start

over repeatedly because he forgot where he was. We started going to doctors to

find out what was wrong and doctor after doctor came up with different diagnoses

or said, " He's fine. Just getting older. " Finally, we went to the Cleveland

Clinic where he was diagnosed with Parkinson's.

>

> However, his PD symptoms weren't like most people's. He was mostly

stiff--very slight tremor and those symptoms didn't start until after the

thinking problems. Since his diagnosis 2 years ago, I can see major decline in

his thinking abilities particularly where executive functions are concerned.

>

> Has anyone else had this sort of situation? My husband is only 58 years old

and this is heartbreaking for all who know him.

>

>

>

[Guest guest]

Dear ,

I think you have come to the right group. Sadly, this does sound like LBD. I

remember that we dragged my Mom from doctor to doctor, and my youngest brother

was the one who put all the pieces of the puzzle together, and figured out that

it was probably LBD (Mom's symptoms were noticeable at age 66, maybe sooner, who

knows).

From there, it was easier to find the doctors who were familiar with the

disease. I had asked over the years if there was something that could help with

the Parkinson's symptoms, because my Mom's hands shook so, that she was unable

to continue cooking. The doctor explained that the medication for the

Parkinson's could make the hallucinations worse...so we never used those meds.

There is a psychiatrist - - who used to write regularly to our

group. He was 58 at diagnosis, and has both AD and LBD. Occasionally he sends

out a post via his blog, but we don't hear from him often, as we used to. I

remember how helpful he was when I was looking into a cough medicine that would

be ok for my Mom to take.

Regards,

Helene in NY

>

> Hi everyone--

>

> I'm new to the group, and maybe don't belong here. Technically, my husband was

diagnosed with Parkinson's 2 years ago, but I've never felt the diagnosis was

acurate. My father has had Parkinson's for 24 years and my husband's symptoms

didn't match up. I'm aware that everyone with Parkinson's is different, but

while I was doing research on PD I came across some articles on LBD and it

seemed to be describing my husband perfectly.

>

> My husband was the most intelligent man I'd ever met. He has a degree in math

and physics, and taught Calculus and physics for several years. When he was in

his early fifties, we noticed a decline in his cognitive abilities. We wrote it

off as " getting older " and didn't worry too much about it, but by age 55 the

decline became more apparent. He began " losing " the car in parking lots and

started having trouble teaching math. He'd start a problem then have to start

over repeatedly because he forgot where he was. We started going to doctors to

find out what was wrong and doctor after doctor came up with different diagnoses

or said, " He's fine. Just getting older. " Finally, we went to the Cleveland

Clinic where he was diagnosed with Parkinson's.

>

> However, his PD symptoms weren't like most people's. He was mostly

stiff--very slight tremor and those symptoms didn't start until after the

thinking problems. Since his diagnosis 2 years ago, I can see major decline in

his thinking abilities particularly where executive functions are concerned.

>

> Has anyone else had this sort of situation? My husband is only 58 years old

and this is heartbreaking for all who know him.

>

>

>

[Guest guest]

Dear Marcie,

My Mom, too, was very bright. She was a Holocaust survivor, so when she came to

this country, she finished school, went to work, got married, had kids and

stayed home. She did go back to school and took some accounting courses, and

worked for a little while when we were older. But - she was very very bright.

A friend of mine from high school told me how her mother had LBD - another

woman who was super bright, and in fact, was a science teacher in a junior high

school for many years.

It is indeed heartbreaking.

Regards,

Helene

>

> Welcome ,

>

>

>

> I've only been on the website a little over two months. But I've read in

> several places that Lewy Body Dementia is more prevalent in men and highly

> intelligent people.

>

>

>

> At the local group I attend there are several men your husband's age who

> also experienced the difficulties doing their job as you describe with your

> Dad. I think both were engineers. I've heard their wives say how

> important it is to obtain a diagnosis before they leave their jobs. I'm

> thinking maybe it has to do with going on disability. I don't know.

>

>

>

> My mom was also a highly intelligent person who loved life and was very

> active. Physically, she could run circles around most of her children.

> She was a teacher and college professor. But now she cannot turn on a

> computer, read, write a card, listen to TV, etc.

>

>

>

> It is very heartbreaking, but you are in the right place. You will not

> feel so alone.

>

>

>

> Marcie

>

>

>

>

>

>

>

> _____

>

> From: LBDcaregivers [mailto:LBDcaregivers ]

> On Behalf Of lcooke57

> Sent: Saturday, August 20, 2011 9:31 AM

> To: LBDcaregivers

> Subject: Would like opinions, please.

>

>

>

>

>

> Hi everyone--

>

> I'm new to the group, and maybe don't belong here. Technically, my husband

> was diagnosed with Parkinson's 2 years ago, but I've never felt the

> diagnosis was acurate. My father has had Parkinson's for 24 years and my

> husband's symptoms didn't match up. I'm aware that everyone with Parkinson's

> is different, but while I was doing research on PD I came across some

> articles on LBD and it seemed to be describing my husband perfectly.

>

> My husband was the most intelligent man I'd ever met. He has a degree in

> math and physics, and taught Calculus and physics for several years. When he

> was in his early fifties, we noticed a decline in his cognitive abilities.

> We wrote it off as " getting older " and didn't worry too much about it, but

> by age 55 the decline became more apparent. He began " losing " the car in

> parking lots and started having trouble teaching math. He'd start a problem

> then have to start over repeatedly because he forgot where he was. We

> started going to doctors to find out what was wrong and doctor after doctor

> came up with different diagnoses or said, " He's fine. Just getting older. "

> Finally, we went to the Cleveland Clinic where he was diagnosed with

> Parkinson's.

>

> However, his PD symptoms weren't like most people's. He was mostly

> stiff--very slight tremor and those symptoms didn't start until after the

> thinking problems. Since his diagnosis 2 years ago, I can see major decline

> in his thinking abilities particularly where executive functions are

> concerned.

>

> Has anyone else had this sort of situation? My husband is only 58 years old

> and this is heartbreaking for all who know him.

>

>

>

>

>

>

>

>

[Guest guest]

Thank you, Carol.  I will check into the doctor you recommended.  We have an

appointment in October (we live 5 hours away--so we don't come frequently)

 

 

To: LBDcaregivers

Sent: Sunday, August 21, 2011 11:46 AM

Subject: Re: Would like opinions, please.

 

-

Your story sounds familiar: my father was an author and a college professor of

anatomy (the final textbook who wrote was called " The Biology of Aging " . He

began having some physical issues with shoulder pain and orthostatic hypotension

7 years ago, and also had REM sleep disorder including hallucination at night of

" little people " that led to a diagnosis of early LBD. Following a move to a

retirement community in the Cleveland area, he met several times with Dr. Ronan

Factora at the Cleveland Clinic who specializes in the " Aging Brain " . While your

husband is young, his brain may still be helped by Dr. Factora or an associate.

Dr. Factora practices at the Main Campus and the Independence Family Health

Center.

My Dad is nearly immobile and on hospice care now, so we don't take him to see

Dr. Factora anymore. But he was a wonderful resource for us a few years ago.

while he also never " diagnosed LBD " , no matter what the dementia was called he

helped us manage the symptoms.

Good luck to you and keep coming back to this group. It has been so helpful to

me.

Carol, daughter of - diagnosed 2004.

>

> Hi everyone--

>

> I'm new to the group, and maybe don't belong here. Technically, my husband was

diagnosed with Parkinson's 2 years ago, but I've never felt the diagnosis was

acurate. My father has had Parkinson's for 24 years and my husband's symptoms

didn't match up. I'm aware that everyone with Parkinson's is different, but

while I was doing research on PD I came across some articles on LBD and it

seemed to be describing my husband perfectly.

>

> My husband was the most intelligent man I'd ever met. He has a degree in math

and physics, and taught Calculus and physics for several years. When he was in

his early fifties, we noticed a decline in his cognitive abilities. We wrote it

off as " getting older " and didn't worry too much about it, but by age 55 the

decline became more apparent. He began " losing " the car in parking lots and

started having trouble teaching math. He'd start a problem then have to start

over repeatedly because he forgot where he was. We started going to doctors to

find out what was wrong and doctor after doctor came up with different diagnoses

or said, " He's fine. Just getting older. " Finally, we went to the Cleveland

Clinic where he was diagnosed with Parkinson's.

>

> However, his PD symptoms weren't like most people's. He was mostly

stiff--very slight tremor and those symptoms didn't start until after the

thinking problems. Since his diagnosis 2 years ago, I can see major decline in

his thinking abilities particularly where executive functions are concerned.

>

> Has anyone else had this sort of situation? My husband is only 58 years old

and this is heartbreaking for all who know him.

>

>

>